Many of you know my partner is a critical care doc. He's smart, concerned and compassionate. He's great for discussing research, drug side effects, frustrations with providers (sometimes.... unless it's about his hospital which I typically don't use) etc. He is not good with emotion or tenderness. For those familiar with Asperger's, I need say no more.
I feel like crap. I have an intensifying pain in my upper right quadrant. Could be from my liver lesions. Could be from the fulvestrant. We won't know until my scan in June. I have learned in 3 years with MBC, it all comes down to imaging. You can analyze labs and journal about aches and pains, but the answer is in the scan. I have no interest in bumping up the schedule as I'm running woefully short of treatment options, so June it is.
Ok, back to the guy. I was lying in bed this morning trying to ignore the pain, and he starts knocking around in the kitchen trying to rouse me. First, it pisses me off I'm not allowed to rest. It pisses me off that he's messing up the kitchen, then he comes in the bedroom, shoves a thermometer in my mouth and puts down a paper bowl of cheap chocolate chip cookies and says, "Happy Mother's day."
The interrogation begins (thermometer in mouth) with "Tell me what's going on." "My side is hurting" (I mumbled through the thermometer the same thing I told him a dozen times yesterday. ) "Does it feel like you are sick systemically?" He says getting louder with each question "No. Please stop yelling." "Do you think this could be fulvestrant?" "Yes. It is most likely the drug." "We need to call Jones (oncologist)" "No. This is drug. If it's not, it's not. I'm not doing anything until my scan. Please let me rest. Just go to the hospital and work. I'm fine" "WHY WON'T YOU TALK TO ME??" "BECAUSE ANSWERING YOUR QUESTIONS IS NEVER ENOUGH FOR YOU. MY SIDE HURTS. IT'S DRUG RELATED. PLEASE LET ME REST AND YOU GO TO WORK!"
So, here I am, in bed alone on Mother's day. I'm a bitch, because I yelled at him when he was just trying to help. Ugh
Here's where you come in. I'm working on a blog or a video series called, "MBC fror the Vain and Temperamental." I think it would be helpful to our partners to have a little insight into what we find comforting and supportive. Would you please share kind and comforting things people have done for you when you're not on your A game? I think it could be a very useful topic.
Thank you in advance! And Happy Mother's day!!
Much love, Andi
Written by
Arisgram
To view profiles and participate in discussions please or .
Arisgram, I'm "newer" on here so didn't know this about your husband but I have a 24 yr old son with Asperger's so I completely understand what you described . I'm thinking hard as to what I have found helpful when I'm not on my A game ....back when I was first dx stage IV , I was terrified and just started Ibrance / fulvestrant when I fell and broke my wrist . Of course it was my left wrist and I'm left handed . Sigh. Pre Covid and at the time my husband traveled a lot . We sat my son down and told him I'd need help with the house (I also work ). I needed my son to blow dry my hair and he also started making me coffee and breakfast . He was really great at all of it - of course it took him a few days to be gentle with the hair brush He is now great at scrambled eggs and will make them if requested. To answer your question, I have found it most helpful during the "painful or stressful times " when my family gives me space to rest but quietly sits with me , checks on me, brings me tea etc . Don't ignore me , don't ask me if I want to go to the store but offer me quiet company and tea.
I hope your pain starts to go away and it's not cancer related . I don't think anyone who is not sharing this experience of stage IV really understands how hard it is emotionally and physically.
How sweet of your son. Scrambled eggs are a staple of mine. My son is also autistic. I remember after my first IV chemo treatment, I asked him to bring me dinner. He brought me Krystals (hamburger sliders) and chili!! I learned to be specific. He was wonderful.💕
Dear Andi, I am so sorry to hear how you are struggling!
My advice is to look for emotional support from womens family and friends, and to write a clear letter to your partner about what you need from him, and what you absolutely don't need.
You are NOT temperamental nor are you a b*tch. You are experiencing physical pain, worsened by emotional distress. Don't let him hijack this situation and make you feel bad for experiencing pain!
I have a family member on the autism spectrum. I know from 37 years' experience that I need to give information black on white, and make my needs and experience explicit.
Studying Non Violent Communication methodology might also help you find ways of expressing your needs to him that will help him to understand what he can't 'get' intuitively due to his neuro diversity.
Hi, I hope you are feeling better. I think that possibly your partner is trying to fix things, most men are like that, esp in the health care field. He may be concerned that you are in pain, there is obviously something wrong, either with your liver or the drug. You say that you are running out of options. Are you turning toward some type of palliative care? Are you taking pain medication or are you against that? June is a long time to wait when there is a lot of pain involved. Please do not take this the wrong way, your partner appears not as intuitive as some, but maybe you need to have an honest talk about what may happen in the future, and your feelings about it. Take care.
It breaks my heart to hear this when you already have to deal with a MBC diagnosis. I am blessed to be on the opposite spectrum with a husband that has been completely devoted to me for 36 years. We are both retired now and he is a very early riser. He coaxes our dog out of our room ( yes, he sleeps with us…always has) and let’s me sleep as long as I want. He checks in from time to time and when I’m awake he comes in smiling with a good morning kiss and asks if I slept well and how I’m feeling. Then asks “can I get you anything”? How I’m feeling dictates the day so we’ll make plans then aside from monthly trips to Duke (6 hr drive round trip, overnight on scan months) which we make in to an enjoyable day trip with dinner on the way back. When we are out and about running errands, etc. he will ask if I’m doing okay, too tired, still up for staying out for a while. On days when I am feeling a little wonky from my meds he’ll set me up on the couch and do some things around the house, yard, tinker with the car and hang out keeping me company. On those days, he’ll offer to go get any food I may be in the mood for if I don’t feel like cooking. Every evening before we go to sleep he gives me a nice hand message with lotion. So my answer to your question I think is if you aren’t blessed by having the love and support like I have, (yes I know I hit the jackpot with mine!)you have to sit down and have a frank discussion about what your needs are. We shouldn’t have to suffer in silence or make due when we are dealing with this life stealing monster.
I'm a long timer with MBC--18 years as of March 1 and I have great inner resources, after careers as a clinical social worker and then as an Episcopal priest. My husband is a retired police officer whose first wife died from MS, which had left her severely disabled, physically, emotionally and intellectually. So he is a very experienced care giver, sadly! I tend to be on the direct side and it works well for us that I ask him (tell him, really, LOL) what I need from him. He's been wonderful about taking over most of the cooking and alot of the cleaning, especially the floors. The things he hates doing are bill paying and grocery shopping. So I do those--bill paying always and about 2/3 of the grocery shopping. I've told him that when I get really sick, I want him to be very involved in deciding whether I stay here at home or go to a residential hospice, His needs really need attention then. My daughter, son-in-law and brother will probably want to be here, which I know can be stressful for our caretakers. I know at the very deepest level that he will be here for me, maybe not always in just the way I want in the moment, but he will be at my side and will love me no matter what. Cancer sure tests us and our relationships! And I feel really lucky to have him with me. Don't know if any of this helps you...... I hope you and your partner will find peace and deep love amidst all the chsallenges!
Hi AndiSo sorry you are having such a rough time.
The pain you are feeling is enough on it’s own, with the worry of what is causing it on top is enough to send you into a tail spin.
My husband tries his best, but he isn’t the best at guessing what I need. I don’t help matters because I am fiercely independent and don’t like to be unable to do anything.
I would really like, from time to time, to be allowed to have a meltdown without it turning into an argument. Sometimes I just need to blow off a bit of steam. I don’t want to direct it at anybody in my family, I just need to grrrrrrr very occasionally.
I wonder if your partner finds it difficult being supportive to someone he is so close to. It’s different for him in his work environment where is isn’t as attached to people. He is probably scared as well and that doesn’t always come across well when you need him to be supportive.
I do hope it has all blown over, and you are feeling more yourself.
For partners specifically, I would appreciate it if my husband (while I have been in painful periods) would let me rest but not leave me alone in the bedroom for hours! (if I didn't yell out to get his attention lol). Thinking to ask what can be done to set up a space better (would you like the curtains closed perhaps?) and then being mindful to ask at different intervals if I might need a drink, or a nibble or the room set-up changed, rather than me having to strain myself trying to get his attention.
It seems like...to me anyway...that cancer is a language all its own. WE speak this language because we've HAD to learn it. Our mates, and significant others, are not as fluent in this language (thankfully). If they were fluent, it would be because they too have cancer. It's really a hard language to explain. I've never dealt with Aspergers, so I don't know how to explain just HOW you feel and WHAT you need at that given time. It's so hard. I'm sorry for all going thru these difficult emotions and needs, that so many times we struggle to make ourselves clear. It's agonizing. But in this group are so many who listen to this language and understand exactly. I hope we all can figure out ways to express ourselves so that we are truly HEARD with the heart, not just the ears.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
He is now great at scrambled eggs and will make them if requested. To answer your question, I have found it most helpful during the "painful or stressful times " when my family gives me space to rest but quietly sits with me , checks on me, brings me tea etc . Don't ignore me , don't ask me if I want to go to the store but offer me quiet company and tea. 
Letrozole and Fulvestrant 
Experience and advice on treatment options with and without Ibrance.
Please help with adjusting dose of cape and questions I should ask?
Ibrance and neuropathy? Please help.
